BACKGROUND: The organization of long-term care is one of the main challenges of public health and health policies in Europe and worldwide, especially in terms of care concepts for people with dementia. In Austria and the Czech Republic the majority of elderly institutionalized persons with dementia are cared for in nursing homes. It is however unclear, how many persons living in nursing homes in Austria and in the Czech Republic are suffering from cognitive impairment and dementia. In addition, basic information on the nutritional status, the status of mobility and the medication prescription patterns are often missing. To facilitate new effective and evidenced based care concepts, basic epidemiological data are in urgent need. Thus, DEMDATA was initiated to provide important basic data on persons living in nursing homes in Austria and the Czech Republic for future care planning. METHODS: DEMDATA is a multicentre mixed methods cross-sectional study. Stratified and randomly drawn nursing homes in Austria and the Czech Republic are surveyed. The study protocol used in both study centres assesses four different domains: a) Resident, b) Care team, c) Relative and d) Environmental Factors. Resident's data include among others health status, cognition, dementia, mobility, nutrition, behavioural symptoms, pain intensity and quality of life. A minimum of 500 residents per country are included into the study (N = 1000 residents). The care team is asked about the use of the person-centred care and their burden. The relatives are asked about the number of visits and proxy-rate the quality of life of their family member. All staff employed in the nursing homes, all residents and relatives can voluntary take part in the study. The environmental factors include among others the organisational category of the nursing home, number of residents, number of rooms, social activities and the care concept. The project started in March 2016 and will be concluded in February 2018. DISCUSSION: DEMDATA will provide important epidemiological data on four different nursing home domains in Austria and the Czech Republic, with a focus on the prevalence of dementia in this population. Thereby supplying decision and policy makers with important foundation for future care planning.

Department for Clinical Neuroscience and Preventive Medicine Danube University Krems Dr Karl Dorrek Straße 30 3500 Krems Austria

Faculty of Humanities Charles University Prague Czech Republic

MAS Alzheimerhilfe Bad Ischl Austria

Zobrazit více v PubMed

Alzheimer’s Disease International . World Alzheimer report 2015. The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. 2015.

Alzheimer Europe . Dementia in Europe Yearbook 2013. 2013.

Eurostat regional yearbook 2012. General and regional statistics [http://ec.europa.eu/eurostat/documents/3217494/5734477/KS-HA-12-001-EN.PDF]. Accessed 15 Apr 2017.

Auer SR, Span E, Reisberg B. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description. Dementia. 2015;14:513–527. doi: 10.1177/1471301213502214. PubMed DOI PMC

European Commission: Evidence on Demographic and Social Trends. Social Policies’ Contribution to Inclusion, Employment and the Economy Staff Working Document. 2013. https://ec.europa.eu/social/BlobServlet?docId=9765&langId=en. Accessed 15 Apr 2017.

European Commission: Investing in Health Staff Working Document. 2013. http://ec.europa.eu/health//sites/health/files/strategy/docs/swd_investing_in_health.pdf. Accessed 15 Apr 2017.

European Commission. Long-term care in ageing societies - Challenges and policy options Commission Staff Working Document. 2013. https://ec.europa.eu/social/BlobServlet?docId=12633&langId=en. Accessed 15 Apr 2017.

Lithgow S, Jackson GA, Browne D. Estimating the prevalence of dementia: cognitive screening in Glasgow nursing homes: Estimating the prevalence of dementia in nursing homes. Int J Geriatr Psychiatry. 2012;27:785–791. doi: 10.1002/gps.2784. PubMed DOI

Holmerová I, Jurasková B, Kalvach Z, Rohanová E, Rokosová M, Vanková H. Dignity and palliative care in dementia. J Nutr Health Aging. 2007;11:489–494. PubMed

Björk S, Juthberg C, Lindkvist M, Wimo A, Sandman P-O, Winblad B, Edvardsson D. Exploring the prevalence and variance of cognitive impairment, pain, neuropsychiatric symptoms and ADL dependency among persons living in nursing homes; a cross-sectional study. BMC Geriatr. 2016;16:154. doi: 10.1186/s12877-016-0328-9. PubMed DOI PMC

Erster Österreichischer Demenzbericht. Teil: Analyse zur Versorgungssituation durch das CC Integrierte Versorgung der österreichischen Sozialversicherung [http://www.wgkk.at/portal27/wgkkversportal/content?contentid=10007.724662&portal:componentId=gtn6b322dd1-28e0-48f3-b1f3-af33c64194c5&viewmode=content]. Accessed 15 Apr 2017.

Luzny J, Holmerova I, Petr W, Ondrejka I. Dementia Still Diagnosed Too Late—Data from the Czech Republic. Iran J Public Health. 2014;43:1436. PubMed PMC

Kitwood TM. Dementia Reconsidered: The Person Comes First. Maidenhead: Open University Press; 1997.

Jutkowitz E, Brasure M, Fuchs E, Shippee T, Kane RA, Fink HA, Butler M, Sylvanus T, Kane RL. Care-Delivery Interventions to Manage Agitation and Aggression in Dementia Nursing Home and Assisted Living Residents: A Systematic Review and Meta-analysis. J Am Geriatr Soc. 2016;64:477–488. doi: 10.1111/jgs.13936. PubMed DOI

Verbeek H, van Rossum E, Zwakhalen SMG, Ambergen T, Kempen GIJM, Hamers JPH. The effects of small-scale, homelike facilities for older people with dementia on residents, family caregivers and staff: design of a longitudinal, quasi-experimental study. BMC Geriatr. 2009;9:3. doi: 10.1186/1471-2318-9-3. PubMed DOI PMC

Verbeek H, van Rossum E, Zwakhalen SMG, Kempen GIJM, Hamers JPH. Small, homelike care environments for older people with dementia: a literature review. Int Psychogeriatr IPA. 2009;21:252–264. doi: 10.1017/S104161020800820X. PubMed DOI

Moniz-Cook E, Vernooij-Dassen M, Woods B, Orrell M. Interdem Network: Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging Ment Health. 2011;15:283–290. doi: 10.1080/13607863.2010.543665. PubMed DOI

Vernooij-Dassen M, Moniz-Cook E. Raising the standard of applied dementia care research: addressing the implementation error. Aging Ment Health. 2014;18:809–814. doi: 10.1080/13607863.2014.899977. PubMed DOI

19. Schüssler S, Dassen T, Lohrmann C. Care dependency and nursing care problems in nursing home residents with and without dementia: a cross-sectional study. 2016;28(5):973-82. doi: 10.1007/s40520-014-0298-8. Epub 2014 Dec 20. PubMed

Schüssler S, Lohrmann C. Change in Care Dependency and Nursing Care Problems in Nursing Home Residents with and without Dementia: A 2-Year Panel Study. PLoS One. 2015;10:e0141653. doi: 10.1371/journal.pone.0141653. PubMed DOI PMC

Simon M, Tackenberg P, Hasselhorn HM, Kümmerling A, Büscher A, Müller BH. Auswertung Der Ersten Befragung Der NEXT-Studie in Deutschland. Wuppertal: Universität Wuppertal; 2005.

Testad I, Mikkelsen A, Ballard C, Aarsland D. Health and well-being in care staff and their relations to organizational and psychosocial factors, care staff and resident factors in nursing homes. Int J Geriatr Psychiatry. 2010;25:789–797. doi: 10.1002/gps.2419. PubMed DOI

Zuidema SU, de Jonghe JFM, Verhey FRJ, Koopmans RTCM. Environmental correlates of neuropsychiatric symptoms in nursing home patients with dementia. Int J Geriatr Psychiatry. 2010;25:14–22. PubMed

All-Party Parliamentary Group on Dementia: Prepared to care. Challenging the dementia skills gap. 2009.

Hasson H, Arnetz JE. Nursing staff competence, work strain, stress and satisfaction in elderly care: a comparison of home-based care and nursing homes. J Clin Nurs. 2008;17:468–481. PubMed

Morgan DG, Semchuk KM, Stewart NJ, D’Arcy C. Job strain among staff of rural nursing homes. A comparison of nurses, aides, and activity workers. J Nurs Adm. 2002;32:152–161. doi: 10.1097/00005110-200203000-00008. PubMed DOI

Montoya A, Mody L. Common infections in nursing homes: a review of current issues and challenges. Aging Health. 2011;7:889–899. doi: 10.2217/ahe.11.80. PubMed DOI PMC

Robinovitch SN, Feldman F, Yang Y, Schonnop R, Leung PM, Sarraf T, Sims-Gould J, Loughin M. Video capture of the circumstances of falls in elderly people residing in long-term care: an observational study. Lancet. 2013;381:47–54. doi: 10.1016/S0140-6736(12)61263-X. PubMed DOI PMC

Osterbrink J, Bauer Z, Mitterlehner B, Gnass I, Kutschar P. Adherence of pain assessment to the German national standard for pain management in 12 nursing homes. Pain Res Manag. 2014;19:133–140. doi: 10.1155/2014/785765. PubMed DOI PMC

30. Vaismoradi M, Skär L, Söderberg S, Bondas TE. Normalizing suffering: A meta -synthesis of experiences of and perspectives on pain and pain management in nursing homes. Int J Qual Stud Health Well-Being. 2016. Published online 2016 May 11. doi: 10.3402/qhw.v11.31203. PubMed PMC

Holmerová I, Vanková H, Jurasková B. Biogerontology in the Czech Republic. Biogerontology. 2011;12:31–35. doi: 10.1007/s10522-010-9300-9. PubMed DOI

Sanford AM, Orrell M, Tolson D, Abbatecola AM, Arai H, Bauer JM, Cruz-Jentoft AJ, Dong B, Ga H, Goel A, Hajjar R, Holmerova I, Katz PR, Koopmans RTCM, Rolland Y, Visvanathan R, Woo J, Morley JE, Vellas B. An International Definition for “Nursing Home.”. J Am Med Dir Assoc. 2015;16:181–184. doi: 10.1016/j.jamda.2014.12.013. PubMed DOI

Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139:1136–1139. doi: 10.1176/ajp.139.9.1136. PubMed DOI

Reisberg B, Ferris SH. Brief Cognitive Rating Scale (BCRS) Psychopharmacol Bull. 1988;24:629–636. PubMed

Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198. doi: 10.1016/0022-3956(75)90026-6. PubMed DOI

Reisberg B. Functional assessment staging (FAST) Psychopharmacol Bull. 1988;24:653–659. PubMed

Shelkey M, Wallace M. Katz Index of Independence in Activities of Daily Living. J Gerontol Nurs. 1999;25:8–9. doi: 10.3928/0098-9134-19990301-05. PubMed DOI

Sclan SG, Reisberg B. Functional assessment staging (FAST) in Alzheimer’s disease: reliability, validity, and ordinality. Int Psychogeriatr IPA. 1992;4(Suppl 1):55–69. doi: 10.1017/S1041610292001157. PubMed DOI

39. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged: The index of ADL: A standardized measure of biological and psychosocial function. JAMA. 1963;185(12):914-19. PubMed

Podsiadlo D, Richardson S. The timed “Up & Go”: a test of basic functional mobility for frail elderly persons. J Am Geriatr Soc. 1991;39:142–148. doi: 10.1111/j.1532-5415.1991.tb01616.x. PubMed DOI

Vellas B, Villars H, Abellan G, Soto ME, Rolland Y, Guigoz Y, Morley JE, Chumlea W, Salva A, Rubenstein LZ, Garry P: Overview of the MNA--Its history and challenges. J Nutr Health Aging 2006, 10:456-463-465. PubMed

Hawker GA, Mian S, Kendzerska T, French M. Measures of adult pain: Visual Analog Scale for Pain (VAS Pain), Numeric Rating Scale for Pain (NRS Pain), McGill Pain Questionnaire (MPQ), Short-Form McGill Pain Questionnaire (SF-MPQ), Chronic Pain Grade Scale (CPGS), Short Form-36 Bodily Pain Scale (SF-36 BPS), and Measure of Intermittent and Constant Osteoarthritis Pain (ICOAP) Arthritis Care Res. 2011;63(Suppl 11):S240–S252. doi: 10.1002/acr.20543. PubMed DOI

Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4:9–15. doi: 10.1097/01.JAM.0000043422.31640.F7. PubMed DOI

Monteiro IM, Boksay I, Auer SR, Torossian C, Ferris SH, Reisberg B. Addition of a frequency-weighted score to the Behavioral Pathology in Alzheimer’s Disease Rating Scale: the BEHAVE-AD-FW: methodology and reliability. Eur Psychiatry J Assoc Eur Psychiatr. 2001;16 Suppl 1:5s–24s. PubMed

Auer SR, Monteiro IM, Reisberg B. The Empirical Behavioral Pathology in Alzheimer’s Disease (E-BEHAVE-AD) Rating Scale. Int Psychogeriatr IPA. 1996;8:247–266. doi: 10.1017/S1041610296002621. PubMed DOI

Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64:510–519. doi: 10.1097/00006842-200205000-00016. PubMed DOI

The EuroQol Group EuroQol - a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208. doi: 10.1016/0168-8510(90)90421-9. PubMed DOI

Greiner W, Claes C: Der EQ-5D der EuroQol-Gruppe. In Gesundheitsökonomische Evaluationen. Edited by Schöffski O, v. d. Schulenburg J-MG. Berlin, Heidelberg: Springer Berlin Heidelberg; 2008:403–414.

Edvardsson D, Fetherstonhaugh D, Nay R, Gibson S. Development and initial testing of the Person-centered Care Assessment Tool (P-CAT) Int Psychogeriatr IPA. 2010;22:101–108. doi: 10.1017/S1041610209990688. PubMed DOI

Auer S, Graessel E, Viereckl C, Kienberger U, Span E, Luttenberger K. Professional Care Team Burden (PCTB) scale - reliability, validity and factor analysis. Health Qual Life Outcomes. 2015;13:17. doi: 10.1186/s12955-014-0199-8. PubMed DOI PMC

Olazarán J, Reisberg B, Clare L, Cruz I, Peña-Casanova J, Del Ser T, Woods B, Beck C, Auer S, Lai C, Spector A, Fazio S, Bond J, Kivipelto M, Brodaty H, Rojo HM, Collins H, Teri L, Mittelman M, Orrell M, Feldman HH, Muñiz R. Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy. Dementia and Geriatr. Cog. Dis. 2010;30:161-78. doi: 10.1159/000316119. Epub 2010 Sep 10. PubMed

Data of a sub-analysis of the DEMDATA study: characteristics of Austrian and Czech nursing homes residents

Cognitive status and use of analgesics and anxiolytics in residents of nursing homes in the Czech Republic

Cross-sectional study of prevalence of dementia, behavioural symptoms, mobility, pain and other health parameters in nursing homes in Austria and the Czech Republic: results from the DEMDATA project